Christmas has come early for Aussie aHUS patients – December 17, 2015

Christmas has come early for Australian aHUS patients following the Federal Health Minister’s announcement late last night to extend patient access to Soliris (eculizumab) from 12 to 24 months before a clinical assessment is required to determine treatment continuation or withdrawal.

The Hon. Sussan Ley MP issued an announcement around 10pm last night, citing her full acceptance of the Pharmaceutical Benefit Advisory Committee’s (PBAC) recommendation to extend patient access to the life-saving medication for aHUS patients who meet certain criteria. Minister Ley stated the Expert Reference Group (ERG) recently appointed to oversee the application of Soliris against PBAC guidelines had “informed them of new clinical evidence which has aided the PBAC’s recommendation of the conditions of use for this medicine.”

This welcome announcement follows many grueling personal battles played out publicly in the media arena over the past few weeks, by terminally ill patients whose continuing access to Soliris was drawing, or had just come to a close.

I thank Ms Ley for exercising compassion toward our aPSGA members, for hearing our plea and ultimately helping to save the lives of Australians living with aHUS.

President of the aHUS Patient Support Group Australia (aPSGA) and mother to Ashley, seven – the first Australian to be granted compassionate access to Soliris courtesy of the manufacturer, who was pulled off drug on November 26, 2015 – applauded the Minister for heeding the advice of the PBAC and agreeing to extend patient access to Soliris for another 12 months.

“Ms Ley has put our members’ minds at ease for the next 12 months, by providing us with access to this life-saving treatment,” said Ms Grey.

“Having continuing access to Soliris is a positive step, and one that will allow many of our aPSGA members to enjoy this Christmas with their families, rather than being hospital-bound and fearing for their lives.

“This announcement has not only brightened this Christmas, but provided us all with hope for the year ahead,” Ms Grey said.

“Before this announcement, I felt like I had been issued a death sentence for Christmas.”

Double-lung transplant recipient battling cystic fibrosis and aHUS, Sarah Mulligan, 29, Cairns, similarly expressed her gratitude to the Minister for helping to sustain her life over the next 12 months.

“Before this announcement, I felt like I had been issued a death sentence for Christmas. But now I feel like all of my Christmases have come at once.

“I had my first dose of Soliris a year ago yesterday, and thought I had received my last dose of the life-saving medication two weeks ago. So this announcement is music to my ears,” said Ms Mulligan.

“I have so many plans for the year ahead – I’m getting married and will be celebrating my 30th birthday.

“Thank you Minister Ley, for hearing our plea, and for granting me this gift of life,” Ms Mulligan said.

“With continued access to Soliris, we can continue to see the benefits of the treatment”

Ms Tammy Hamawi, who, together with her daughter Bianca, 19, Gold Coast, has fought a fiercely protracted battle to secure Bianca continuing access to Soliris, and other Australians fighting the devastating blood disease, cited her sheer happiness at receiving the news.

“I am so happy. I feel like a very proud mum, knowing that people have been considered [with this decision].

“With continued access to Soliris, we can continue to see the benefits of the treatment,” said Ms Hamawi.

“It’s a very good thing that patients have been granted this extended access to Soliris. Thank you Ms Ley.”

As a family, we’re going to enjoy this Christmas and the New Year, knowing Isabelle will be safeguarded for another year. It’s a wonderful Christmas present for us.

Mr Jose Ruiz, father to Isabelle Ruiz, 20, Melbourne, expressed similar sentiments, stating, “I am very pleased, of course. I’m just hoping that the same agony we’ve recently experienced, with the uncertainty of what Christmas will bring, is not repeated next year.

“But for now, as a family, we’re going to enjoy this Christmas and the New Year, knowing Isabelle will be safeguarded for another year. It’s a wonderful Christmas present for us.”

Perth mother-of-two, May Ali, who recently presented the Health Minister with a 40,000 signatory-strong petition to save her life by providing her with continuing access to Soliris, also expressed her gratitude to Ms Ley and the PBAC.

“I’m very grateful for the compassion shown by Minister Ley and the PBAC in making this decision and I am very glad that it will impact not only on my life, but on the lives of other Australian aHUS patients,” Ms Ali said.

I wish to express my thanks to every person who lent me their support, in whichever way. Every little bit helped make a difference.

“I’m looking forward to spending Christmas and the rest of the holidays just doing normal things with my family.

“In particular, I wish to express my thanks to every person who lent me their support, in whichever way. Every little bit helped make a difference,” said Ms Ali.

Importantly, Ms Grey expressed her gratitude to the ERG for recognising the pivotal role played by the treating doctors, in managing their patients’ ongoing access to Soliris.

“Some doctors may elect for their patients to trial coming off treatment. Charging doctors with the responsibility of making this decision is a great step, for only they are acutely aware of the individual needs of their respective patients,” Ms Grey said.